The following stories have been shared by those living with endometriosis, for the benefit of everyone in the endometriosis community. You can read all of these personal stories online here (each story has its own page) or save the print-ready .pdf format. You will need Acrobat Reader 5.0 or better to be able to read them. Feel free to print copies for your personal use, and please respect copyright; kindly seek permission before publishing elsewhere.Personal stories sharing experiences and practical hints can be of immense help to others. Please consider sharing your own valuable endometriosis experiences. You may choose to share just one brief aspect (eg Mirena IUD) and your story can be anonymous. If you are interested in writing your own story, please Contact us.

Barb's Story (Hamilton, March 2012)

I cannot remember ever not having painful periods, but assumed as a teenager this was all part of “growing up as a woman”. After many years, however, I spoke to my female GP about my concerns for which she said it to be quite normal and good pain relief would help, without a referral for further investigation. Back then though I didn’t think of questioning a “professional Doctor”! It wasn’t until 1995 when my husband and I had been trying to conceive for one year, and coincidentally at this time I had severe ovary pain, I got referred to a gynaecologist. Following his advice I had my first exploratory surgery which resulted in a laparotomy (a laparoscopy would have been kinder). It was discovered that I had severe endometriosis with two ovarian cysts; one being the size of an orange! Shortly after, my endometriosis and cysts returned. I was advised to have a hysterectomy. I was only 26 years old. I decided against this for the fact that I still hoped for a pregnancy. Even though my endometriosis pain was severe, I was fortunate that I only suffered one or two days of pain with my monthly period. My wheat bag was a godsend, taking it to work was compulsory for the pain, hugging it to my tummy pushing my lap under my desk so male staff members wouldn’t notice too much. Three years after my initial operation I had another laparotomy. Shortly after I went to see an Iridologist in Auckland. He prescribed me a concoction of 23 herbal pills per day. This was hard going especially when I had to swallow about half of them as I was heading out the door for work each morning. I found this process draining and expensive, and decided to seek help with a local naturopath. I was then put on a diet of foul-tasting herbal medicine. Looking back I probably didn’t give either of these treatments enough time as it does take a while for maximum benefit. We were given the option of publicly funded IVF treatment, but were advised we had a less than normal chance success rate. Whist we were waiting on the IVF waiting list, we decided to pursue adoption also. Following the weekend Adoption Seminar we filed our profile and eagerly waited. In the meantime we were called up for IVF treatment in Auckland. Unfortunately it was unsuccessful. Shortly after, I received a phone call at work to say a baby girl had been born in New Plymouth and we had been chosen as her new parents. It probably sounds like we lived a ‘roller coaster‘ life, but we were trying our hardest to have a baby either way. I relished my new role as a stay-at-home mum; our daughter was a real delight. One year later I was still suffering with occasional endometriosis pain. My gynaecologist said he really didn’t know what action to take next and referred me to another specialist in Auckland. I remember the new specialist saying I was unlucky that I had severe (Grade IV) endometriosis but lucky that I only suffered pain one or two days per month. He booked me in for surgery in Auckland. When I went to get my preoperative blood tests done three days prior to surgery I also mentioned that my period was about six days late at this stage. I couldn’t believe my ears when they rang later that day saying that I needed to cancel my impending surgery because the test results came back that I was pregnant, after six years of trying! This was back in 2000 and our “miracle baby” boy is now 10½ years old, and adopted daughter now 12.

Shortly after the birth of my son, I decided to recommence oral contraception - after not being on it for about 6 years - and to this day continue to use this, taking a continuous dose to help control my endometriosis with breaks every 4 months or so. I haven’t had any more surgery. Checkups and ultrasounds have revealed that my endometriosis is still present. My ovarian cysts have disappeared and my new problem is now fibroids, which really don’t seem to bother me too much. Suggestions of changing my diet may improve endometriosis symptoms, but I love my “balanced diet” and don’t seem to have the willpower to eliminate dairy, tea, coffee, chocolate etc. I’m at the stage (or age) of my life where I should probably stop the pill and seek a more natural approach. I became an Endometriosis Waikato foundation member back in 1999. Over the years I have found the information supplied and the support from other members at the monthly evening meetings invaluable, as none of my friends or family members have endometriosis. I’ve also enjoyed the occasional coffee group chats too. I’ve always liked to assist in any way I can; Women's’ Health expo stand, Treasurer for a couple of years, Purple Walk and regular poster deliveries.